We are Ilke and Glenn, and we live in Lennik (Belgium).

In August 2022, our son Rune was born at the hospital in Halle, after an uneventful pregnancy.

There, it was determined that he was a hypotonic baby. To give him the best care and further investigate what exactly was going on, he was transferred to the UZ (university hospital) in Ghent.

He spent 3 weeks there in the neonatal ward.

In the first few days there were some problems with his oxygen saturation and body temperature. Those bodily processes demanded too much energy from Rune, so he needed support with them.

Feeding was also difficult and was given through a tube.

After 1 week we were finally allowed to give him a bottle ourselves.

Rune was calm and moved very little. We had noticed that during the pregnancy too. He moved little, but that wasn’t seen as a reason for concern — otherwise everything seemed okay…

After 10 days we got news from the doctors: Rune has the congenital (or inborn) form of MD. This was a harsh verdict, and we were given a bleak outlook for the future. According to the doctors, 4 to 5 babies with the congenital form of MD are born in Belgium each year.

Overnight, our life changed. We had to enjoy the beautiful moments together. Living day by day…

After 3 weeks we got good news: Rune was allowed to come home! Albeit with a monitor to check his heart and lungs.

The doctor said our son would probably learn to walk, but later than average. He would get better and stronger up to a turning point. From then on he would start to decline, and there are as yet no medicines to stop this.

In the winter of 2022–2023 we had to make sure our boy definitely didn’t get sick, because he wasn’t yet strong enough to fight off germs.

He wasn’t allowed to go to daycare, so together with family we arranged childcare.

Rune (16 months now) is doing well at the moment. For a few months now he’s been going to the hospital school Inkendaal 4 days a week. Inkendaal is a well-known rehabilitation hospital near us, which also has a daycare and school. That’s unique in Belgium; children with all kinds of conditions are cared for there on an outpatient basis in small groups and receive targeted therapy every day (speech therapy, physiotherapy, etc.).

Rune is developing well, he’s cheerful and sociable. Motor-wise he is somewhat behind children his age.

Because our son has MD, that means one of us, his parents, has it too.

After testing it turned out that Ilke is the one who has this terrible disease. She inherited it from her father. Until Rune’s birth, we had no idea that MD was present in the family.

Glenn:

Ilke has been working half-time since Rune’s birth. Because of all the tests (for both Rune and Ilke), our life became much busier. In the first year we went to the physical therapist with Rune once or twice a week, and to the osteopath once a month.

We’re fortunate that Rune can now go to the hospital school, where he gets group physiotherapy four times a week and individual physiotherapy twice a week, as well as occupational therapy twice a week.

Rune and Ilke also regularly go for check-ups at the neuromuscular centre at UZ Gent, and Rune is also followed there at the developmental centre.

We want to give our boy every chance at as good and full a life as possible.

Ilke could now go back to working full-time, but because she suffers from fatigue, she would miss out on many wonderful moments with our son. She tries to go to the physical therapist twice a week, and does so while he’s at school.

At the moment we’re trying to get extra child benefit because Rune needs extra care. UZ is helping us with this, but it’s harder than expected. The disease isn’t very well known, and Rune is doing well despite the diagnosis and the pessimistic outlook we were initially given.

Ilke:

After my diagnosis, the pieces of the puzzle seemed to fall into place.

Hands that often cramp up, reduced strength, stomach and intestinal problems, needing a lot of sleep…

At the moment I go to the physiotherapist twice a week, to stimulate my muscles. That helps.

Because of the many visits to the hospital and the physiotherapist, our life has become much busier.

I still like to go out with friends, but I often back out because I’m too tired. In the evening, once Rune is in bed at 7pm, I often just fall asleep on the sofa.

I used to be very sporty — I did athletics, volleyball and football. In recent years I’d taken up recreational triathlon. That wasn’t going very well; building up my fitness was difficult, almost impossible. I think that because of this disease, I won’t be able to properly do any serious sport again.